HIV Treatment Education in 2002

I like to think of myself as an AIDS treatment advocate. To me that means I wear several hats. I try to stay focused on the treatment aspects of living with HIV when wearing my peer treatment educator hat, and sometimes wearing this hat can be rewarding.

I remember one client coming to me complaining about stomach trouble along with trouble with his eyes. He had talked to his doctor about this several times, but they couldn't find the cause. I know that patients often might not feel comfortable talking with their doctor, no matter how good the doctor. That can mean that the doctor may not get all the details and information needed to figure out the problem. Because I work as a volunteer and don't have to generate units of service, we could talk all day. We were able to list a couple of symptoms that he hadn't shared with his doctor. Then we got on the Internet and were able to find a couple of reasons he might be feeling this way. Together we learned that many antiretrovirals have been known to cause gastrointestinal problems. The choices were his; I just helped him look for the information. After all, he knows his body better than anyone else. Weeks later he came to see me again. He was happy to say that, because of the information he had taken to his doctor, they changed one of his meds and within a few days he felt better. His eye problems turned out to be that he needed glasses!

This is one example of what I do. I don't diagnose, I don't contradict, and I don't make the choices. I just help find out what's what.

Then there was the time I was sitting in a doctor's waiting room and started talking to one of the other patients. She told me she had heard about people in New York using mercury to treat HIV. She was planning to inject herself with mercury from a thermometer to try to cure herself of HIV. Having been an IV drug user for years, using a needle was no biggie. She wanted to know how many times she would have to do it for it to work. I was stunned. I spent the next three hours gently talking about how that might not be the best idea and that she might not want to do something like that without having a little more information than "a friend of a friend said that he read something somewhere." A few months later I ran into her. She was still walking around so I guess she choose not to treat herself with mercury. Did my talking to her make a difference? I don't know. Would she have used such a dangerous, deadly home remedy if I hadn't talked with her? I don't know. Weeks, sometimes months, can go by and I'll never know if all the work I do trying to help others is making a difference. It can be hard. But I've seen the good it can do, so I just keep on trucking.

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Recently I had a call from someone referred to me by a case manager. He was newly diagnosed and scared. He was afraid that the people he worked with would find out. He was afraid to tell his parents because of how he thought he had gotten infected. He was afraid of the way he thought it would be to die from AIDS. We spent like six hours talking. I tried to give him some hope, talking about how we now have a whole bunch of drugs for fighting HIV. I explained that I had been positive for several years and was doing fine. I told him about a few people that I had met over the years that had been living with our friend HIV for 15 plus years and were doing great. He wanted to know more about the drugs and how they worked. I gave him a short history of how we got from AZT monotherapy to using our friend "the HIV drug cocktail." After several hours we split. When I got home I could barely talk, my throat was so hoarse. My girlfriend and I had to communicate by pointing.

I haven't seen this client since, but I hope he's doing well. I try not to think about the possibility that he's not doing well. I've had to learn to shut off that part of my feelings or else I'd be helpless. I know that no matter what I try to do, some of the people I talk to are going to get sick and some will die. I suffer when I hear of someone that we lost. I know it's not all on me, but if I think about it too much I'll end up in the "what if I had ..." place that goes nowhere. If I invest too much in the outcome, think too much about the losses or make it too personal, I wouldn't be able to move forward.

I try to walk a safe line when talking to clients. I try to keep to the most solid opinions out there. I never contradict a doctor's or other professional's opinion or advice. Every one of my encounters will have the question "Have you talked to your doctor about this?" or "Can I help you talk to you doctor about this?" I think part of the value of what I do is that I am also HIV-positive. I can offer some personal experience. There is always one thing each client and I have in common. We are both trying to live with HIV.

I do this as a volunteer, most of the time not knowing if I'm doing the right thing or if I'm helping. But someone has to do it, and if I don't, who will?

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